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Sunday, 24 August 2014

Anne Keith recently made an excellent comment on Facebook in response to this video:

With a few edits for clarity, this what she said:

So very sad.

Myalgic Encephalomyelitis (M.E.) can be extremely devastating yet there is a whole group of psychiatrists who try to dismiss this as an imaginary disease caused by pessimism, over-exaggeration, or activity-avoidance. Would a teenager really stay in bed for years, allowing herself to be tube-fed, because she is whiny? Have you ever met anyone willing to suffer 50 hospitalizations for fun? Did this girl decide to die because she was lazy or because she was unbearably sick?

Ridiculous and insulting doesn't begin to cover the off-handed dismissal of such deep suffering.

Early on, a psychiatric explanation was one of many theories which deserved to be explored. That was long ago. It was shown to be unfounded years ago, when the physical underpinnings of M.E. began to be documented. Despite a paucity of research funding into the physical causes of M.E., it has now been shown to most likely be an auto-immune disease, often initially triggered by minor viruses. Numerous physical abnormalities have been found by a wide variety of top-level scientists throughout the world.1

Any claim that this is a psychiatric disease is now driven by three things: egotism, greed, and ignorance. Members of the "Wesseley School," mostly in Britain, decided early on that M.E. (which they now call Chronic Fatigue Syndrome) must be mental illness even though they had nothing to back up their guesses. They happened to be in influential places at the right time and they increasingly shaped the perception of this illness. They are clearly aware of all the physical findings yet they neglect to mention or act on these "inconvenient" facts. Their self-serving refusal to include these findings is scandalous.

Their flood of misinformation has left both the public and most treating physicians in ignorance. The truth is that, just as multiple sclerosis is not "faked" (as once claimed by psychiatrists), and as epilepsy is not caused by demons (as "everyone" once knew), so M.E. is not caused by "wrong-thinking" or "activity avoidance." There are well-known immune abnormalities and a very unique - and dramatically abnormal - response to exercise that can be definitively shown by a 2 day treadmill test.2

It is time for the medical community, and for the public at large, to denounce this group’s disingenuous "research." Their studies, including the massive ‘PACE’ study in England, intentionally exclude the sickest patients while they include those who merely report "being tired" (that is, who do NOT have the illness' distinguishing symptom of an abnormal response to exertion).3

This group’s studies could be compared to someone claiming to do lung cancer research which excludes those dying of lung tumors while including those who have a "tickle in their throat." Just as no doctor would accept any study that defined lung cancer as "a cough," so no doctor should accept any M.E. study which defines this illness as "fatigue." Doctors would denounce the "cough” study’s claim that over-the-counter syrups and cigarettes improved patients’ outcomes. In the same way, they must denounce "fatigue" studies that claim “right-thinking" about symptoms and/or increased exercise cures M.E. Patients are being directly harmed by such ego-driven, self-serving "research."

It is just wrong that these people have abundant funding while far better researchers (such as Lipkin, one of the world’s best virologists) are forced to literally beg in order to get basic funding to research this illness.4,5 It is past time to stop funding junk studies and start appropriately funding real research that further explores the physical causes of this catastrophic illness.

What can you do? Shine a bright light on this scandal. Share stories like this one as widely as you can. Help support M.E. advocacy, often done on a shoestring by suffering patients. Ask your politicians to fund REAL research instead of wasting money on poor studies designed to support psychobabble treatments. Tell the stories of M.E. patients you know (with their explicit permission, of course) so that they no longer suffer in silence and obscurity. Most of all, speak up when you hear someone say "everyone" knows M.E. is the same as depression, laziness, or normal fatigue - and clearly state it is anything but that. Help stop the self-serving psychiatrists, who appear determined to further their own interests (science and patients be damned), so that not even one more patient has to experience the living hell that Lynn and her mother suffered.

The monitor "optically measures blood flow" - which basically means it uses lights. The promotional material says it is for use on the forearm but I have also strapped it to my ankle successfully.

It charges via a handy docking station, so no expensive batteries. The blue dots are my addition so that I put it in the right way around!

The device is MUCH more comfortable than a chest strap monitor, and also seems to transmit much more reliably. In fact provided there are no solid walls in the way, it can transmit across quite a distance.

The thing that felt strange at first, was that the monitor doesn't have it's own readout. However, it sends the data via bluetooth to a variety of phone apps. I chose Endomondo.

Once monitor and app are all set up to communicate with each other, this is very simple to use. And it is not just a HR monitor, you can also link it to your phone's GPS and so see where you've been on a map and track your speed and distance!

I mostly just use the HR feature and the read out looks like this.

The slider at the bottom appears so that the display continues, but the screen is locked.

After finishing the "session" a summary can be accessed:

And also a time-line, showing how HR varied through out the activity:

There is also a chart showing how long was spent in each "zone". I edited these zones online so that the the boundaries between the zones are: 60, 80, 100, 120 and 140.

Here you can see I spent almost 3 minutes above 120 bpm.

The phone data is only available immediately after the session. However the data is transferred to your online Endomondo account via Wifi. All the sessions are then stored for later analysis.

The graph in particular is easier to interpret online.

There is a facility to tag and name each session. I tend not to bother, but rather just use the system for feed back whilst active, and then when I review things later that day on the computer.

Anyway, it's all very interesting, and I think monitoring my HR is definitely helping me understand where I spike my HR and therefore what activities I need to be careful with....

..... more thoughts on that later.

In the mean time I hope others have found this review useful, and might be encouraged to also start monitoring their activities.

It's not going to "cure" ME, but hopefully as a sort of budgeting tool, this can prevent me from becoming "over-drawn" on my energy account and incurring a high-interest payback later.

PS [Jan 2015]I now use a Mio Alpha HR monitor that has some advantages over the Rhythym+ 1. It has a read out like a watch2. It can run all day on an overnight charge3. It has an alarm function that beeps when my HR goes too high.It can also "talk" with Endomondo on my phone so that I still get my pretty graphs!Sue Jackson describes her Mio Alpha in a blog post here

Some more of my Heart Rate Monitoring posts can be found here: Just ME INDEX